On staying connected to my blind son

My fourteen-year-old son Tim moves away this weekend. He is going to Perkins School for the Blind in Boston, where he will live in a dorm with other blind, physically disabled students. He will walk the beautiful campus of brick and ivy as he sweeps his cane, going to his classes every day, swimming in the pool, going to after-school clubs, all with assistance. He will wake up and make his bed with the help of kind strangers who will become friends. He will eat every meal with kids who struggle in the same way—unable to pour water, cut their meat, spread the butter—but they will learn. He will call us every night and I will only see my son’s face through a screen.

I have spent the last fourteen years keeping his body safe and close. When he was a baby, I held him, fed him, cradled him, swaddled him. When he couldn’t walk due to his disease, I held him by two hands and walked behind to hold him up. I did this for years and miles, my back aching a lot, my heart aching more. When he could finally walk and he went to school, I let go of his hand with great trepidation. I watched his bus staff, his classroom, his teachers, all the while yearning to know that they would hold him close with love and support him as I did. Sometimes they did, sometimes they didn’t.

A few years later we sent him to a school for the blind in the Bronx. I left his twin sister and my husband for days on end to be near him, staying at a rented apartment close to the school, two hours away from our country home. And when that school could no longer accommodate his motor impairments, we came home.

For four years I homeschooled him, sitting in what Tim proudly called his “office”—a table and computer crammed in the back of our pantry that smelled of soy sauce and cheese doodles. Here I guided him as he learned to read, write, spell, multiply, and think deeply about issues in our world.

We sent him to a special sleepaway camp, Double H Ranch for children with chronic conditions, near Lake George. His speech was still barely intelligible, his gait unsteady, he was legally blind, and it would be years later that we discovered hearing loss. But the fist of fear squeezed my heart as we left him there, wondering if we could trust the camp to protect our shaky, wobbly, vulnerable son.

I became burnt out homeschooling Tim, and he was ready to be part of a larger community. We wanted a learning environment that would be right for his needs. Perkins in Boston turned out to be just that place, but we had to wait a semester until a spot opened up. So he went locally to a new school, a place for students with special needs who aren’t pursuing a diploma. Here he met his first really close friend, David, a boy in a wheelchair who cannot use his legs. I watched them once sitting together at the mall food court, hands clasped across the table, both of them deliriously unable to stop smiling.

When it came time for Tim to leave his temporary school, he was confident and excited about his new life in Boston, but he cried many tears at bedtime, holding a framed picture of himself with David.

And now I am supposed to drop him off with school staff in Boston, three and a half hours from home in New York—and then drive away and live my life separate from him?

*

Quantum entanglement is when two particles are broken apart from each other and separated by great distance, but still have a mysterious connection. When one particle spins a certain direction, the other reliably takes the opposite spin. Einstein did not believe in what he called this “spooky action at a distance.” The idea that these particles were separated in space but connected in a deep way led him to spend nearly the rest of his life looking for a “unified field theory.” Einstein had discovered that gravity is a field, much like the electromagnetic field. He believed that, like electromagnetism and gravity, quantum entanglement was due to some unknown field holding both particles that were ripped asunder. And he searched till the end of his days for equations that could show how all these fields join together to create the magic of this universe.

Like those particles separated across the universe, there is a mysterious connection between me and my son. There is a field that holds us. It is as real as dark matter, as powerful as a gravitational field, and as all-encompassing as Einstein’s unified field. It is called love. When Tim is sad, or scared, or angry, I feel it deep in my heart. When he is happy, elated, in love, I feel it deep in my heart. This is not because he has a disease or is “special.” It is because he is my son.

Most of the time, I think I have managed to treat him with acceptance and understanding. But there have been times, many lately, when it was just too much to feel so much. I created a carapace, invisible but strong, around my heart to allow me to avoid the feelings, to function in my life. When he was bullied by another boy I was able to wall off the feelings of anger and sadness and powerlessness it created deep inside. He spun one way, I spun the other.

But this hard shell also made me miserable. I knew he could feel something blocking our connection, and I know he probably felt unloved in those moments. I have been working to put chinks in this hard protective shell I built over the years. Instead of feeling burdened when I need to put on his shoes, hold his hand to stabilize him, or brush his teeth, I look for the joke. My father gave me his good sense of humor and an ear for puns. If I can find a funny thing to say, the hard shell gets a crack in it. Love, like light, flows out of the smallest of opening.

We took a big trip to Yellowstone a few years ago to see the total eclipse of the sun. After thousands of miles, our little car pulled in to a municipal park somewhere in Idaho. I remember sitting with Tim, our eclipse glasses on, terrified that he would take them off and lose the limited sight he has. A friend who is totally blind had warned me that, as a child, she had watched an eclipse straight-on and she thinks it further blinded her. As the moon slowly covered the sun, we were able to see something that was there but invisible to us by day. It was only in seeing the changing shape of the sun, from bright fireball to a crescent, to a shining diamond ring, to a fiery halo around that invisible sphere, that we saw the moon.

My love for Tim is as regular and constant as the cycles of the moon. Wherever he may be—hundreds of miles away, there is a field that keeps me locked in connection with him. Our bond is also like entangled particles—if he is alone and scared in his dorm room, I will feel it too, instantaneously. And forget all those famous physicists who say Einstein was wrong. I believe there is an undiscovered field that holds those separated particles, like the field of love that keeps Tim and me entangled. And, even when senses fail, it allows him to feel my love.

Darcie Whelan Kortan is a writer-columnist-blogger who lives with her husband and daughter in upstate New York, where she enjoys reading books on physics—very slowly. She can otherwise be found hurtling down the Massachusetts Turnpike on her way to visit her son.

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